Archive for May, 2012

My son is going through treatment for clubfoot. On Tuesday, he had his Achilles procedure and final three week cast put on. We’ll be done with phase and into 23 hour bracing by mid-June. His treatment has gone exceptionally well. He was supposed to have 5 weekly casts and then this one, but ended up only needing 3 weekly casts.

The Super Preemie. This is his pediatrician’s nickname for Drake. He’s been gaining well since the metabolic scare and 26 calorie days. We’ve been blessed. We’ve been lucky.

Inguinal hernia occurs in 30% of preemies. Especially male preemies.

On Tuesday night, I started his bedtime routine about 8pm with a diaper change. Hmm, that doesn’t look right. Called the hubby in. That’s not supposed to look like that right? Looked it up on our local Children’s hospital site (I avoid Dr. Google for my own sanity). He didn’t have emergency level symptoms, so I rocked him through his nightly crying moments trying to keeping him calm so the hernia didn’t worsen.

Our pediatric group opens at 8am. I had an 855 appointment by 8:05. My diagnosis guess was confirmed by 9:15 and we had a referral to the children’s surgery group with a warning that it would take 1-2 weeks for an appointment.

Our job for the next two weeks is to keep a 3 month old, 1 month adjusted infant from having straining crying fits. And to not panic over the promised minimum 1 night stay at the hospital.

I’ve kept him isolated for 2 months to keep from going back to the hospital. I need to remember I can’t protect him from my body or his developing one. It’s out of my hands.

This is my first Mother’s Day. I’m so thankful to be spending it with my little boy.

One place I have to thank for helping me through the NICU time and these first weeks home is PeekabooICU. It is run by JodiRN, and the mission is empowering the preemie parent. One feature is journey bracelets that allow you to memorialize the NICU journey your baby took. My mother sent one to me with an amazing set of beads that really do tell the story of Drake. There are also blog posts with great information, and she does wonderful things for the March of Dimes.

In addition, she published a Mother’s Day video. This is the second edition as last year was the first. It is amazing to see all the babies at birth and how far they have come. They really are tiny, fighting miracles. I’m so thankful to be holding mine in my arms.

I saw a comment on a blog post today (life with jack, I really admire this mommy and her son, I can’t imagine that journey) that really made me pause, and reflect.

“If the NICU is like a roller coaster ride, then I’m never going to an amusement park again.”

Like a roller coaster, there are peaks and valleys and grand adrenaline rushes and moments of stomach dropping fear. The difference? You know that eventually that ride is going to end, and you are going to walk away unharmed.

When you’re the parent of a baby journeying through the NICU, you don’t have this knowledge. You have no idea when this horror ride is going to stop and let your family off.

Hope. That’s the light at the end of the tunnel that is the NICU. The hope that one day your child will fight through the medical issues surrounding them and you will be able to take them home. If you’re very lucky, you don’t end up with further battles to fight.

Drake is undergoing treatment for clubfoot. He was diagnosed as moderate and his orthopedic doctor is using the Ponseti method of casting and bracing for correction. My son should be lucky enough to have both feet planted firmly on the ground by the time he is 4 if all goes well. It’s hard to watch my baby be put in cast after tiny cast, but I know in my heart that things could be so much worse.

I was there many hours a day for the 34 days my son was in NICU. I know our “roller coaster” was shorter and less painful than most. I thank God for it, but I won’t forget the beeping of his tiny neighbors. I won’t forget the hours of Kangaroo Care when his heart or breath would stop and nurses would rush over to look at him. No amusement park ride has ever been so horrifying.

I choose to take the happy today. Sure, I could sit here and worry and make myself crazier over Drake’s missing Synagis armor. I’m not gonna. I’m just going to stay at home with my beautiful boy until June and stay a hand washing, sanitizer general.

Yesterday, was our 2 month pediatrician visit. We were 2 months, 1 week, 6 days actual/6 days adjusted. Drake weighed in at 7lbs, 14oz and 19.75 inches. I was on cloud nine. His pediatrician was super happy with his growth, his chubby cheeks and thighs, and his head size.

The pacifier didn’t work for calming during his three shots though. He stayed quiet and still while sucking on it for his leg cast last week, but he screamed bloody murder while I talked to him and held him still. The nurse was surprised I was willing to do it. Apparently a lot of new moms can’t handle it. You have a different perspective when you’ve watched a PICC line be inserted in a twig of an arm, I guess.

Yay my amazing super preemie. Keep on surprising them all.

We did end up staying up all night together snuggling though. He was running mild fever and had an upset tummy from the shots and would scream if I laid him down. Sleeping like an angel tonight though. 🙂

Yesterday, I received a letter from our insurance company denying coverage for Drake’s next Synagis shot. The reasoning given was that the season ends in March and giving the shot outside of the season shows no benefit. However, I can go to the RSV tracking system on the cdc site, and see that while cases are declining our region is still not done with it due to a late onset.

The secondary reason was that as a preemie of 29 to 30 weeks gestation, he doesn’t really need it anyway. Excuse me? So now, I’m waiting for the pediatrician’s office to call me back. They have a special person on staff to deal with appeals like this.

The whole thing came after a night of nonstop crying due to gas and reflux. So I was exhausted anyway, and I just lost it. I was washing and sanitizing bottles and having a nervous crying fit. All that runs through my head is the pictures of infants who have had it I’ve seen on the literature for Synagis and RSV.

I don’t think I have the strength to endure another NICU stay for Drake. And you’d think the stupid insurance company after spending half a million or more dollars on his first stay would want to pay a paltry $1k to keep him from going back.

One thing that got me through his first stay and going every day to the hospital and leaving alone was a mural at Good Sam. When you come into the hospital on the 5th floor from the parking garage and make the right to take the elevators to the 9th, there’s a mural. It’s done in bright yellows and blues and it has that verse. Weeping shall endure for a night, but JOY will come in the morning.